A query please, been on preds since June 2015 (PMR/GCA) now first week at 8.5 mgs. Felt really strange this morning, achy, exhausted, couldn't wake up so I went back to bed for a little while was shivery etc. bit of head pain. I woke an hour and a half later and felt lots better, still achy but better in self.
So could this be my adrenals struggling or perhaps my condition rearing up again. Not having got this low before I am not sure what to expect .......
Many thanks in advance
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lesley2015
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Interesting to read your post, I have a similar history of PMR starting in April 2015 and also down to 7-ish mgpd Preds currently. Also, I can relate to the symptoms you describe - miserable or what?!
A couple of questions:
1. Are you reducing / have you (or not..) recently reduced your preds using the DSNS method or similar? At 10mgpd and below, reductions need to be even more gentle (max 10% of the previous periodic dosage, and for some, even less). This is where the poor, sleepy adrenals should be being coaxed (not bullied) into waking up again, and can protest loudly in the way you describe.
2. Have you been more physically active than usual or under any significant stress and strain?
3. Might you have a low level flu bug or virus?
4. Could changes in the weather be a factor (cold, damp) ?
From experience, any or all of these could conspire to give you a flare in PMR symptoms.
Just for good measure, I think another factor in the equation is PMR just having a mind of its own and 'cycling' in its symptoms regardless. It's weird, sometimes I can do quite a lot physically with no reaction (fatigue, stiffness, pain etc) and feel good despite reducing the preds. Then, I can have the symptoms you describe for no obvious reason at all.
Sorry to say, there isn't always an obvious Cause and Effect with PMR symptoms. Yes, it's confusing, but you seem to be doing the right thing by rolling with it and resting up until the storm passes. However, if in doubt (esp re head pain..), get straight onto your GP for a second opinion and maybe blood tests? Better safe than sorry..
I absolutely agree, Lesley 2015! Yes, you can feel freezing cold in relatively warm temperatures (with a flare) - or, perfectly nice and warm in colder temperatures (when the body's natural 'equilibrium' is restoring itself?). Yes, it's so confusing. Confused.com, or what?!
I think the equally important psychological 'work' (aside from the medical stuff) with PMR / the Preds is to try to make some sense of the complex and often contradictory set of symptoms that go with either or both. It's taken time for me but, after 2 years of enduring and trying to understand how this awful illness works on body (and mind..), I've started to recognise the patterns of Cause and Effect better: and this helps me to have a relative sense of control and confidence in the process long-term.
If for no other reason, one great benefit of this forum is to be able to 'bounce' onto / share our experiences with others who not only give expert technical advice but also moral support when we're feeling like **** physically or emotionally with PMR or just need a bit of a grin to distract us! A much better resource than even the best GPs or specialists can offer due to their busy schedules - and sometimes a relative lack of knowledge.
As you say, another day tomorrow, and have faith that things will get better soon.
Try to keep smiling in the meantime - that helps too
Hi Lesley, I have the same symptoms right now and am as puzzled and fed up as you are.It's a good job we have each other because in my experience doctors have no time and little curiosity for this level of detail with symptoms yet they remain worrying.
First week at 8.5mg? Maybe you have gone one step too far for now. Go back to 9mg and see if you feel better. If you do, wait a couple of weeks and try again.
How do you reduce? Straight from everyday one dose to everyday the new dose? Or slower?
I have reduced .5mg at a time and on a regime that has so far been ok. I reduce week one out of the seven days will have two at the new dose - then the following week every other day at the new dose and then the 3rd week two days at the old dose until the 4th week I am on the new dose, with just a .5 reduction.
I am fighting a virus I think, sore throat will not go!
I also rode my horse two days in a row last week, got carried away with the spring like weather.
Also, had a new puppy last week, which will give me more incentive to walk (not yet still having vacc, and it is a tiny breed so I wont over doe it) but she is currently causing me a little more work, but mentally she has given me a boost.
So not sure what the culprit is, the situation, reduction of preds or my body trying to cope...... I appreciate I most prob should go back up to 9mgs but it has taken me from beg of september to get to this point .... so I have taken it really slowly.... ?
And just because it worked in the past does not mean it will always work! Eventually you get closer to, even arrive at, what you are aiming for: the lowest dose that manages the symptoms as well as the starting dose. This isn't a relentless journey to zero come what may,
Depends on whether they decide to work or not! If they are slow getting their act together you will feel increasingly fatigued - that is a sign to take it a bit slower perhaps. If you feel OK (or at least, as OK as we can expect) then they are probably waking up.
How do you feel when the adrenals are 'working' again (or starting to..)?
Briefly: Fantastic! Easy, warm, relaxed all over (physically and mentally), tons more energy. You feel happier, lighter in mood, you sleep better, food even tastes better. The difference is like Night and Day - I've recently experienced this at 7-ish mgpd on Pred and it really is dramatic - while it lasts...
Just a word of caution though: you have to / learn to accept that the combined processes of weaning-off the preds and / or PMR going into remission are not that predictable nor guaranteed in their timescales. And, other factors can frustrate the process (e.g. over-activity, stress, other illnesses) - as you've suggested.
My (amateur) advice is to make the most of it when you feel 'better' - but not to assume that you're out of the woods yet. It's a slow, frustrating, Snakes and Ladders journey with this chronic illness (and the powerful meds that control the symptoms), but with patience and pacing (energy-wise), many people report that they can see light at the end of the tunnel and a return to 'normal' life (whatever that means!).
Seriously PMRpro, the occasional pocket of almost complete relief from the symptoms is quite dramatic. It feels fantastic because, due to the long-term debilitating nature of PMR, you forget how it is to feel 'normal' (whatever that is!).
As for making the most of it, I mean enjoying / appreciating - not going mad with over-activity
I have many days of feeling pretty good - I honestly have almost no PMR symptoms provided I don't try to force a reduction. I'm also back to 7mg after my flare a year ago and return to 15mg. Any niggles I have are almost certainly due to myofascial pain syndrome - and that is a different thing. Not altogether, they overlap, but the secret is knowing which is which!
That's good PMRpro, it makes me wonder if I've often under-dosed on the preds, i.e. not taken enough and / or not for long enough at a time. My strategy has been to just take enough to take the edge off of the symptoms (pain and stiffness) rather than mask them totally, and nudge downwards as per DSNS.
It's often said here that we should try to get to the lowest possible dose of preds that 'control / manage' the symptoms (or words to that effect?). But I guess 'control' is subjective, and a matter of interpretation.
Either way, it's good to feel increasingly better, albeit with a few hiccups along the way
No - I'd say that is the wrong way to go about it and I often say there is no virtue in taking too little pred. You MUST have some benefits to balance out the downsides.
When the symptoms are properly managed as well as that starting dose did it is a sign there is no inflammation. The inflammation does damage to blood vessels and possibly other tissues - storing up possible problems in the future. Long term unmanaged inflammation can lead to increased risk of cardiovascular disease and even some cancers.
One lady got off pred and after about 4 or 5 months, back came the well-known symptoms. Her rheumy put her straight back on pred, 7.5mg was enough to do the trick but she was about to go on a holiday postponed from the first time round episode of PMR and the rheumy said 10mg for the holiday. She had a wonderful time (an all singing all dancing African safari) and has reduced a bit since. BUT, this time she has a very different attitude to the pred dose: like me she is happy at the dose that works and allows her to live. First time round she did her Precious Princess act to be able to use a lower dose - which often ruled out a lot of things. Like me, she still refuses to do some things (housework?????) so she can do the things she wants to do.
No compromise - I take what I need. I'm lucky I suppose - my GP says "you need what you need". You are a long time dead and this isn't a practice run at living...
Interesting, I guess I have felt pressured to reduce otherwise my Rhuemy will insist I try Methotrexate. He also says he is not interested in my aching shoulders or arms, just my head pain. He hasn't listened to any concerns etc., So with this in mind I have requested from my GP and patiently waited for a second opinion with another Rheumy, I have my appointment in March.
I have never been physically examined and feel I may also have RA - I cannot kneel if feels if I have a sharp splinter under my knee ..... so will be interesting to see what the new Rheumy says, lets hope I have not jumped from the frying pan to the fire!
Any doctor who told me he wasn't interested in a sign/symptom I had as part of my clinical history would be history as far as I was concerned (he was!).
Lesley - if the new person isn't up to scratch I'm sure there are people on the forum from your neck of the woods who may be able to recommend someone particularly amenable.
Thank you - my go had referred me to someone he felt was good and approachable but the appointment had come through as being in the Clinic of someone else but hoping they will be ok.
That isn't good - you are entitled to choose both hospital and team and specify that. You may not see the person but you should be seen by a member of their team. So if the first one is not approachable - insist on a retrial!
Thank you - I have just looked at reviews on the consultant and they are very poor, doesn't listen and lack or caring etc.
I have just rang the hospital, they have no-one else available within the 16 week period and will not tolerate being fined. So I either see this chappie or go back to GP and start another 4 month wait ....... which as my GP is good I will most probably do.
I have made appointment to see GP (1st available 10th March - consult app was 17th Match) but feeling very frustrated!!
Possibly worth turning up - and you may be pleasantly surprised. Remember nobody ever bothers to add nice comments - and some people will complain about nothing.
It makes sense about the effects of unmanaged inflammation PMRpro.
This is a long-shot personal theory, but I'd welcome your expert opinion:
Let's say you have (one has) experienced low level pain and inflammation for a long time (pre PMR dx or otherwise) but have become conditioned to / tolerated it, and so have psychologically 'filtered it out'. In other words, you have an objective (but perhaps not clinically measured) base line of symptoms (inflammation, pain, stiffness etc) but which you have come to subjectively perceive as 'normal' in your own health / age context.
Then: PMR symptoms and eventual dx, seemingly instant relief from all symptoms courtesy of the 'magic' preds and a subsequent precarious descent via tapering from initial steroid 'euphoria' - which can be as much due to a sense of massive relief and liberation from the sudden, scary, crippling symptoms?
Later in the process (depending on the effectiveness of the taper and other factors), a return to a new base line tolerance of symptoms - but which might be similar to, or possibly greater than those experienced pre PMR.
In other words, your tolerance (of pain, stiffness etc) might in fact have shifted upwards on the journey from the previous 'normal' (pre PMR dx and crippling symptoms) to a newer one - which is at least better than the worst symptoms experienced before PMR dx. A seeming Result - and maybe the Memory Department of the brain / emotional mind plays a part in this somewhere..?
Talking of brains, mine hurts now after this conjecture But it will be interesting to hear your and others' thoughts on the 'Mind' aspect of PMR, subjective experience of symptoms and all that comes with it...
Yes PMRpro, chronic pain can significantly affect memory and cognition (not to mention the psychopharmacological dimension).
It seems that the subjective experiences / emotional memories of previous pain can last in the mind even when not clinically proven currently, as you say.
My interest here is in the process of determining, as best as possible, some objective reference point / comparison between past and current symptoms levels (+/-) where patients can more confidently gauge how they are doing in the longer-term process symptoms-wise, in context. This is because many here often report confusion (and despair) about the complexity of causal factors in the variation of their symptoms despite the best wisdom.
But that's not meant to challenge the authenticity of the often very real experiences of symptoms that many here report - nor the expertise generously offered on this forum. I appreciate that it's not all psychosomatic!
I find many people are unable to accept the need for pacing to avoid pain - not just fatigue. They don't understand why they feel so awful - but to me it is obvious from the list of what they said they did. When it is pointed out, they can see it too.
From what you say, probably a combination of all of these things?!
Even with the best / most gentle of tapering methods (as you're rightly following), when the body's 'energy battery' is so depleted that it's easy to suffer a flare / relapse through no fault of your own. On the other hand, I don't think any of us want to just sit around and wait, possibly indefinitely, for PMR to pass. Life has to be lived in the meantime, and I've come to the conclusion that flares are just part and parcel of the condition / process for better or worse and with the best-laid of plans and intentions.
I think all we can do is try to reduce the risks of flares occurring (and their severity) by taking a sensible approach to life whilst 'one wing down' - but at the same time not to become afraid of pushing the limits just a little, especially if you enjoy your leisure activities.
If it's any consolation, at the weekend I washed, seriously valeted and tinkered with the 'fleet' of 3 family cars (one of my favourite pastimes). 5 hours of strenuous bending, stretching, leaning and polishing in nice weather, and a great sense of satisfaction at the end. Yes, I paid for it for a couple of days after (stiff, tired, sore muscles) - but worth it for the sense of achievement.
From experience, I agree with PMRpro about adjusting dosages +/-at any stage. Don't worry about nudging back upwards the preds just a little if necessary, and get used to 'rolling with it' (i.e. resting up) when you have some setbacks on the journey? Better to take longer to reduce the preds and have some enjoyment / quality of life in the meantime than to doggedly stick to even the 'best' reduction plan and suffer unduly for it. I've been there and got the T-shirt too!
Thanks appreciate your comments and yes its a balance isnt it? Mostly I get it right but then sometimes think, for my sanity I have to push it to enjoy something and expect to rest up for a couple of days after.
This episode just felt different for some reason. Who knows eh?
I agree lesley, I'm a natural fidget so I tend to default to 'action' even if I know I'll pay for it later :-/. As PMRpro and other experts rightly say, we have to 'clear the decks' for a few days if we are having a flare or know we're likely to after pushing things a bit.
I think one of the most frustrating things about PMR is the 'uncertainty' factor. As you say, who knows? Sometimes it's hard to fathom exactly why we're feeling worse (or maybe better).
Just an update, went back up to 9mgs from 8.5, but yesterday and today absolutely awful. Wanting to sleep all the time, headache, aching and tearful - so have taken an extra 5mg. Really frustrated but need to find some sort of quality of life, its really not good trying to reduce and being unable to function. WHen I feel down with this condition, as most of us I daresay, I feel really down.
Sorry to hear that you're feeling so bad all round. I flicked back through your earlier posts and can only think that you maybe have / had dropped the preds by a bit too much and / or too quickly and are still getting a reaction to this despite upping the preds yesterday?
You also mentioned some extra physiological and emotional 'load' recently (enjoying your horse riding, the flu, etc?). It's just a guess, but maybe the cumulative effect of the above is taking a little time to get to you - despite a quick increase in preds to try to balance it. I'm sure PMRpro and other experts here will confirm the process better than me, but it seems that once you have a 'flare' (i.e. all the symptoms you describe), it takes time and patience for things to settle down again - despite upping the preds.
This is my experience, at least, and the balancing-out cycle can take a week or more. Frustrating, or what?! Be patient and I'm sure things will be ok.
My GP says my GCA is quite aggressive ~ and seems resistant to calming down, so I have taken it very slowly ..... but who knows. When I feel well I try and do little things I enjoy, but we all know its boom & bust sometimes, even the cold wind triggers my head let alone trying to lead a somewhat normal life! ( I have a lovely soft furry hat I have just bought to help.)
Like many here I am only in my fifties and I find it extremely frustrating, I no longer am able to work, so financially we are having to be really careful and when I cannot do the simple things I enjoy, I get, like most, quite depressed.
No worry lesley. I'd overlooked the GCA bit - obviously you need to be even more careful with that. Let's hope your GP is on the ball?
Even with (only..) PMR, I know what you mean about the cold wind - I feel it much more than pre-PMR when I was 'Superman' and oblivious to the weather! I think the bottom line is that, with either of these conditions, the body's 'energy battery' is very low and far less tolerant of any physiological / environmental / psychological 'variance' from normal.
It's easy for me to say, but I'm sure many of the 'veterans' here will confirm that PMR and / or GCA do make you re-assess your life and capabilities whilst you're in the process of (hopefully..) some kind of recovery. For some, that's not a bad thing after a stressful life in the past.
Yes, feelings of depression, not only as a result of the symptoms and drugs, but also around facing uncertainty about the future can be very challenging. But try to hang-on-in there - try to remember that things CAN get better, as well as worse! :-).
I'm ok thanks, it's been a tough journey for me too (morale, energy and occupationally / financially-wise), but at least this great forum has been / still is a great source of support and expertise - not to mention a lot of fun.
Good luck with your GP tomorrow, fingers crossed for you.
So, just an update ...... had long appointment with my GP who is lovely and listens ect.
He is extremely concerned about how my GCA seems to flare - it seems I am unable to get below the 10mg mark, and I am suffering (like most) from many of the side effects of preds. I have had two serious falls recently, (?muscle wastage) and generally am feeling pretty awful.
He is unable to specifically do more than he has to get me a referral to my rheumy of choice, so l have make an appointment to see my original one who has an excellent clinical reputation but I find difficult to talk to etc.
I am having xrays on my knees which are swollen and painful.
Also decided to try a course of methotrexate - i have been reluctant this was suggested in September when I was on 11mgs, I am now on 12.5!
If you have knee problems it won't help - and it may be a sign it isn't "just" GCA. It will be interesting to see how you get on with the methotrexate.
Mmmm yes - can't say I feel enthusiastic- but will give it s go!
Hi Lesley, I have found your posts really interesting and i feel your pain...quite literally! I am on a very similar journey and have avoided methotrexate but am now considering it.
I have not ridden my horse for a very long time, too tired, to stiff etc. My balance isn't what it was so I have borrowed an exercise bike to help improve muscle with less risk of a fall, my real bike sits idle in the tack room.
Pain is something I struggle to quantify. Part of my brain refuses to acknowledge pain until it is severe. I am not sure if it is because riding and training horses for my living for many years I have had to ignore pain and now it's a habit, or if , subconsciously, i believe that I have to push boundaries to get anywhere. I hate the pred side effects, from fluid retention to hair falling out, weepy ness , well the list is endless yet still I need it.
I hope you find Methotraxate helpful and look forward to reading about how you get on, I may well be following the same medication path soon.
I think having horses becomes a way of life, so if we are in pain we usually just know there is the mucking out, chores and exercise and get on with it, I have had my own etc for over 30 years.
However, this condition put a whole different light on this. I found myself, before diagnosis - (it took 5 years for diagnosis ) that I began to distance myself emotionally I think to cope with the situation.
Once diagnosed, had to come the acceptance that things for now had to change. My daughter, bless her took the chores of my horse on (with her own), if I ride she tacks up for me, goes at my pace and then un-tacks and I just go straight home and rest - not a situation that I find easy, but its that or not riding.
My Knees cause me problems, so not sure if these are PRM or not, I have had two bad falls (not riding just on my own two feet!), which has not helped.
I have had a grumbling tooth for four months, 4 lots of antibiotics, a root canal filling and this culminated in the extraction this week, a fractured tooth. This had not helped my condition atall.
I have had my xrays on my knees and bloods, will get the results tomorrow and then assume start the MTX trial, which I am nervous about but in all honesty, its worth a try because I am not managing to get below 10mgs.
Like you and so many, I just want to feel well, more myself and get my life back a little.
Best wishes - I look forward to hearing how you get on if you do decide to try the MTX.
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